Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

They Just Don’t Get It


I am just so frustrated right now.  They just do not get it.

From the moment we are diagnosed with cancer, we not only want to get done with it, we want to be able to get over it, and get beyond it.  We look forward to the day that we hear about the magical “5 year mark”, that unofficially makes us “cured”, or at least in society’s eyes, less likely to hold our cancer experience against us… A.K.A DISCRIMINATION!!!

Many years ago, it was discovered, that many cancer survivors, particularly with Hodgkin’s Lymphoma, because of the extreme levels of radiation, and the highly toxic chemotherapies used up to the turn of the century, were developing issues because of the treatments that saved their lives.  In the late 1990’s, protocols soon became established to begin following up cancer patients “for life”, not just for the possible return of their cancer, but to make sure any late developing side effects that would develop, would be managed at an earlier stage, than allowed to proceed to the level of a “widowmaker” like I experienced, or worse.

Here we are, two decades into the new millenium, so much more experience and knowledge, and yes, many doctors and caregivers now recognizing the need for follow up care for life, and still, I am seeing posts like this:

“I’ve been told that I no longer need to do my yearly check ups, as a matter of fact, the doctor says I don’t need check ups for my HL at all anymore. ”

While I am extremely happy for this young nearly 20 year survivor of Hodgkin’s Lymphoma, I am dumbfounded, as she explains that she does have some late effect issues, her doctor does not seem to be concerned, presenting her with the opinion that he is washing his hands of her, convincing her of his obvious release of any problems.

She had been treated during a transitional time when radiation therapy amounts were being reduced and more targeted, and the toxic cocktail of chemotherapy had also been modified, but still contained two of the most brutal ingredients in that treatment regimen.  One of those drugs that was personally responsible for the demise for the death of a 24 year old friend of mine five years ago, surviving his Hodgkin’s, only to die from the noted rare effect of the drug, simply because the doctor did not follow the follow-up protocol that was available.

http://www.survivorshipguidelines.org/

THE INFORMATION IS RIGHT HERE!!!  WHAT THE HELL IS IT GOING TO TAKE FOR MEDICINE TO WAKE UP AND REALIZED THEY NEED TO DO MORE THAN JUST CURE US OF ONE DISEASE TO LET US DIE OF SOMETHING ELSE?!?

I am just a normal human being, no doctorate degree in medicine.  But I did my research.  I share the information just like the hundreds of other long term survivors I know of, that tell of the many issues we face, and yes, why we face them.  Together, we all try to inform and educate doctors and nurses, for many, our primary care givers who were never taught the issues we have to deal with, yet rely on them for the diagnosis and treatments.

The Children’s Oncology Group website is the most accurate guideline for treatment and follow-ups for many cancers and their treatments.  It has been created by the experts.  It is about time that doctors understand, we do not have a choice once we have had cancer.  We may be done with the immediate, but it is the future that we need to manage.

I am quite happy for the young woman who shared her post, and have encouraged her to refer to the above website, and to immediately seek out a survivorship clinic, which clearly is more equipped to deal with issues she already has, rather than just be released.

Not Being Discussed About Health Care


There is no argument.  Health care in the United States is messed up.  The system set up to take care of us, makes us the only country in the world to profit off of its sick and dying.  Health care in the United States is for the benefit of those only who can afford it.  I have railed against both the insurance companies and big Pharm for their corporate greed.  It goes without saying, I am an advocate for universal health care, as a right, not as a privilege.  And I understand that we are no longer a country that cares about its fellow man or woman, and that if circumstances beyond a person’s control have left them unable to obtain insurance, well then, too bad for that person, some do not want to pay for them, even if it means paying less themselves.  Some people will not help another.  They just do not care.

I have written many posts about this.  But today’s post is not about the greed that is leading to American citizens, adult and children to lose their lives, because they could not afford their care.  It is about a care that has not gotten better.

In the first half of my life, the joke used to be that my doctor would only see me for a seasonal allergy shot.  In 1988 I was diagnosed with Hodgkin’s Lymphoma, that all changed.  In 2008, my health went kablooey when late developing side effects finally got bad enough requiring attention.  I have been dealing with these situations for over eleven years now.

The one consistent through this entire time, over 30 years?  I have had the same primary care doctor.  I still do.  It is a little more difficult to pull off as we are geographically separated over 1000 miles, but when the opportunity comes up, it is her that I go to see.  Why?  Because over that time, I have a doctor who knows me inside and out, how I make my decisions, how to help me make my decisions.  More importantly, because she is that good, that knowledgeable, that experienced.  If something else were to go wrong with me, I trust her 100% to make the right decisions given my unique health situation.

For years, I have been encouraged that I “need” to find someone locally, especially having cardiac issues.  There is no way for me to get help a thousand miles away if I should ever be in the middle of a heart attack.  And I agree.  Here is the problem.  I am 0 for 6 in finding any, and that is without dealing with an emergency.  This is just for a simple physical.  And I have my reasons, very good reasons.  One barely had any time to hear anything about me.  Another challenged my knowledge about my health and the preventative methods I go through, to maintain my health.  The worst offender, told me I had to forget dealing with anyone else I had seen, I would only deal with his people.  I was supposed to forget all of those who took care of me for the last eleven years.  I have no words to describe how I felt as I walked out of that appointment.  Florida does not offer the greatest health care even for the healthy people, let alone someone with unique complications.

But a time did come unfortunately, that I would face a situation that I would be forced to deal with the local medical community here.

Chest pain.  I have had it before.  Usually just an episode that lasts thirty seconds and would go away.  I have had this happen many times, last time actually being checked about it, back in 2012.  Emergency room diagnosis, was “something did occur, not sure what,” and I left.  But this time, the pain did not go away.  And while I did not have any other symptoms of having a heart attack, having a history of two heart surgeries, and having other cardiac issues, I made the decision to go to the hospital last month.  Spoiler alert, I am sitting here typing this, it was not a heart attack.

This post is about what happened during those thirty-six hours while I was in their care, or lack of.  While I do rail against the greed of the insurance companies and Big Pharm, the actual care needs improving just as much.

Upon arrival, I was “triaged”.  This is the technical term for an interview and vital sign check before taking you back to the emergency room.  It is during this time, an “identification bracelet” is placed on you.  I bolded that and italicized it.  Why?  Because the entire time that I was in the ER, that bracelet was never looked at once.  Sure, verbally my identity was confirmed, but that bracelet is supposed to be checked.  Now you may be saying, “Paul, what the hell is the big deal?  You know who you are.  You answered the person.”  One of the first things ordered for me, was a chest x-ray.

As a tech rolled through the ER with the portable x-ray machine, he stopped at the bay next to mine, and said, “OK Mr. Edelman, I am here for your chest x-ray.”  The patient while awake, just sat there while the tech began to position the patient.  At this point I called out, “I am over here.  I am Paul Edelman.”  The tech rolled the unit over to my bay, positioned me, snapped the x-ray, and left, WITHOUT VERIFYING MY ID BRACELET!!!!

WTF!!!  Just moments later I would learn that the individual in the bed next to me, was dying.  Can you imagine me getting a copy of his x-ray with my name on it?  OMG!!!  I had blood work done.  They never checked my ID.

A patch with nitroglycerin was put on my right shoulder, and I traded the pain in my chest, for a decent sized headache.  That is the trade off for opening ALL blood vessels.  Preliminary testing revealed that I was not having a heart attack, but definitely something was happening.  At that time, I gave all the information and history, on me.  I told them how to get all of the records that were necessary to keep me alive, and to keep them from making mistakes.

I would be kept overnight for observation, and scheduled for cardiac testing the next morning, a nuclear stress test, and an echocardiogram.  I have had several of these before, so it was no big deal.  As I was completing the stress test, I could see the EKG strip, which I did not see anything abnormal for me.  And when I was finished with the test, had the final x-ray taken for that test, and went back to my room, to way for the echocardiogram.  There is just no excuse for what happened next.

A resident came into my room, and had revealed to me, that I had an “abnormal” stress test, and I would be heading downstairs for a catheterization.  You see, when you have an abnormal stress test, it is pretty certain you have a blockage somewhere, and it needs medical intervention.  There was only one problem.  I had just had one of these caths, six months earlier.  And my issue was corrected.  There was no way I was letting them go near me at this point.

Me:  Um… okay.  Here is what I am going to do.  You will not be doing a catheterization on me.  You are going to discharge me and I am going to go right to the airport, and fly to the doctors that know what to do with my unique health conditions.

Dr.:  I’m sorry, you do not understand.  You cannot fly.  You need this taken care of.

Me:  I do understand.  You do not understand.  I am not letting you or anyone here do anything.

The doctor left, and then I was rolled down for my echocardiogram.  Great.  That was going to be a fun test now that I was all stressed out.

After the test was done, I was taken back to my room.  A nurse came into my room with a huge smile on her face.

Nurse:  Ok Mr. Edelman.  You got your wish.  You’re going home.  Everything is perfect!

Huh?

Me:  I’m sorry, what?  What do you mean everything is perfect?

Nurse:  Your stress test is normal.  You can go home.

Me:  That is not what  the doctor just told me an hour ago.  I want to see my cardiologist… NOW!

For a moment, I was thinking that I was that much of a pain-in-the-ass patient, and they were simply being accommodating and getting me out of their hair, which of course is the wrong thing to do regardless.  But then my doctor came in.

Me:  Doc.  What the hell is going on?!?

Doctor:  Well, the good news is your stress test is normal.

Me:  That’s not what the other doctor said.

Doctor:  Um, yeah.  It turns out that she had not read the whole report.  She had not seen the x-ray pictures that were normal.  Your EKG was abnormal, but the pictures confirmed everything was okay.

Me:  My EKG was abnormal?  She did not wait for the pictures?!?  What the fuck man!!!!  I know my EKG is abnormal.  T-wave inversions.  Right?!?  Even I know that I have them.  And if you had verified my medical records I gave you, EVERYONE would have seen that issue.  But when you tell me I have an abnormal stress test, I know what the fuck that means.  I have been operated on twice because of that.  What the hell is wrong with her?!?  Who does this shit?  She was going to have my cathed again?  Unnecessarily?  Exposing me to risks that this hospital is not prepared for, and clearly not skilled?

I left the hospital about two hours later.  I obtained my health records of the visit.  I want to say I was shocked, but I was not.  Under each test that was done, was the following phrase:

“no prior records to compare to”

It did not matter that I told them about my health history, or how to get my records of everything that was done to me.  Shit, I even had access to the same records through my phone.  They did not even consider them, or my concerns.  And this is why I do not have local care.  This is a major issue with our health care.

Though all agree something happened that brought me into the ER, nothing was determined or diagnosed.  Just “return to hospital should the symptoms appear again.”  Sounds like a plan, but I am going to need some extra time to get to the doctors that I know will save my life.

One final note, do not think I am ungrateful for it not being something serious.  I am very grateful.  But I am scared shitless and the quality of care, or lack of, that I am depending on to keep me alive.

Another Candle Burns


Again, I am mourning.  Yesterday, I was informed of another long term survivor of Hodgkin’s Lymphoma in my circle had passed away.  And I want to clarify what I mean as a “long term” survivor, as I do not want any of my recent followers or readers to believe that this is a potential fate for them.  Because in reality, as much as they may be annoyed by this fact, cancer patients today, now have a protocol in place, to be followed up for the rest of their lives for any possible late effects, to catch them in their beginning stages before there is a chance to develop into something major, like I have written in the past.

This is always tough news to receive amongst my fellow survivors.  Because those of us who have been diagnosed with issues related to our treatments 20, 30, 40 years or more ago, until recently, had been forgotten.  And only upon learning our medical status, did we only have a chance for ourselves to finally breath, knowing that we were not crazy with the way we felt or that our bodies felt.

I belong to many groups related to Hodgkin’s Lymphoma and long term survivorship.  Each group has a large membership based in the hundreds to the thousands, spanning the globe.  And what we get from each other, we cannot get anywhere else, including from our own caregivers, understanding and knowledge.  But this fraternity comes at a price, emotional attachment.  And that price gets paid, when we receive word that another survivor has passed away.

Yes, it can and does get overwhelming.  Some of my fellow survivors must step aside, because of the overwhelming feelings, not just for the loss, but out of fear what they may face one day.

As survivors, we can do one of three things.

We can just walk away, and live the best life we can, oblivious to the ills tormenting our body.  When our time comes, it comes.  What we do not know, cannot hurt us, and in the end, we will never know.  But boy life will have been great.

We can know what is wrong with our bodies, and do what we can as it happens, but not spend any time dealing with the issues while they are manageable.  Because that would mean us thinking about our fate, and that is just no way to go through life.  Instead, “okay, dealt with that.  Time to move on.  Oh, another crisis, deal with it, and move on.” And so on.  The only problem with that, is if we wait too long to deal with an issue, it becomes to late or at best too major.

And the third option, the one that I prefer, is to accept what has been done to me, to give me nearly thirty years of survivorship.  I have had four major events in my life since my HD days, all caught “last minute”, because I was not followed up properly.  I was living life, travelling, playing ball, and spending time with my kids.  But those first two options have not been an option for me over the last eleven years.  You see, I need these issues dealt with before they become too extreme.  My late effects doctor told me, our goal is to not only witness my daughters graduate, possibly get married, and maybe even give me grandchildren.  But there is only one way that this can happen.  And it goes beyond taking care of myself, knowing the late effect issues, and having them taken care of.

It also takes the many people I know, who have been there, done that.  We all rely on each other as survivors to help us get through each health event, and also to be a shoulder when we say goodbye to another.  As time goes on, this happens a lot.  And it does not get easier, because we grow so close to each other.

And so, I light another candle today, for another Hodgkin’s survivor.  You will be missed.

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